Thursday, August 28, 2008

Before I post, I wanted to let you all know that Louie's mom has a great post on her blog. Check it out here.

As you all know, preschool started Monday for Payton. She always loves being around other children and I think she really does enjoy it. With that being said, our evenings this week have been tough. Payton was reverting back to her outbursts, tantrums, wetting her pants, etc but Bob and I thought it may just be because of everything going on (the fair, preschool, getting ready to move). She's definitely had some bumps in her routine so this is how she's dealing with it. Last night (as she did the other two evenings) she was constantly telling me her stomach hurt, was telling me she didn't want to go to school, and wouldn't sleep. It's tough because she still is not the best communicator, but I really was trying to get out of her why she didn't want to go to school. Finally she said something about a whistle, put her hand to hear mouth and made a 'whistle' noise. I couldn't believe we narrowed it down from 'noises' (like she first told me) all the way down to a whistle! I told her we'd go in a bit early this morning and talk to Mrs. Miller about the whistle.

This morning on the way in I asked Payton what she was going to talk to Mrs. Miller about. She ofcourse said "the whistle". I wasn't suprised she remembered because my lands the child talked about it all night long :) When we got there Mrs. Miller said "Good Morning, Payton!" and gave her a hug (like she does with all the children) and then Payton said "talk about the whistle". Mrs. Miller held out her arm and sure enough she had a whistle on a bracelet on her arm. Mrs. Miller said "yes, I use the whistle outside when it's time to come in for snacks". Payton just kind of looked at her, so I tried to finish it up there. It was chaotic and I felt like I didn't have time to really get my point across, but Mrs. Miller told Payton she would stand far away from her when she blew it. Payton was her usual self and smiled huge and said "OKAY!". I wasn't comfortable with the answer, feeling that even though she was far away, Payton would still focus on it all night. I, myself, was still nervous about it and then as I left the intercom went off paging for one of the teachers. I didn't dare turn around and look at Payton's face when it went off because I knew I would be brought to tears. In my mind, I can picture her hands going to her ears and the frightened look on her face.

Once I got to work I decided I'd give her aid a call. She was ofcourse very nice about it and then Mrs. Miller wanted to talk with me. I explained to Mrs. Miller that I didn't have a chance earlier to explain that Payton is making herself sick over the whistle - up late at night, up by 4am worried about it, and basically venting it out on us at home - and that I was concerned that blowing it when she's far away from Payton is probably not going to be enough. She said she always tells Payton before she blows it to give her advance notice that it's coming and the day before Payton told her not to do it. She said she explained to Payton that she had to blow it because it was time for everyone to come in for snacks. Payton ofcourse said "OKAY!" and went along with it because that's her nature. In a strange way she is a people pleaser and really does WANT to do what the other children are doing. The teacher asked if I was aware of anything else bothering her and I told her Payton just kept saying "noises" and then finally said "whistle" so I think the whistle is it. Thankfully, she said they wanted to do whatever would make Payton comfortable and help her want to come to school. Thank you God for a teacher that cares.

So, this morning my heart is aching because we're just a few days in school and already noises are getting to her. She'll ofcourse adjust to many of them, but I hate it because I still don't think people realize how bad it hurts her. How do you explain to people that you might as well just slap her across the face because it hurts that bad to her (actually probably even worse than that)? The mother in me ofcourse wants to protect her and it brings me to tears just thinking about it. But yet I'm also cheering her on because she communicated to me what was bothering her (that's huge)!!!!

Tuesday, August 26, 2008

He's not my little baby anymore. I can't believe how well he fills out his carseat. How time flies! He is now a whopping 24lbs - quickly approaching his sister - and before long will be able to get her back for all the times she beat up on him :) Actually, it's really neat because Payton will try to get him to go with her wherever she goes, "Come on Bubby, let's go!" It's music to my ears.

I think Payton had a good day at school yesterday. It was her first day and she was definitely still taking it all in last night. She just kinda spaced off....wet her pants on the way home, sat in the high chair (for some reason it really relaxes her to either sit in her car seat or sit in the high chair), wet her pants again and then seemed to snap out of it around 8pm and get back to herself. It was just all new to her and she was really processing it I think. When I took her this morning she was ready to go and excited to see her teacher. She really enjoys being around all of the kids.

Payton and Koen both seem to be feeling better from the bug they caught (Payton only had it for two days, so that was good). So far Bob and I have avoided it somehow. Next on the list: moving this weekend. I'm so glad it's a three day weekend!

Monday, August 25, 2008

I am still seeing a profound difference in Payton. It's actually unbelievable to me. She still gets nervous and anxious (she got up at 4am today - first day of school....took two baths and continually said her tummy hurt) BUT her way of handling it is different. I guess I should say she is able to cope. Instead of screaming at the top of her lungs nonstop and having very low 'lows' she is actually coping with situations. Even her 'routines' of things are changing. For instance, before going to bed at night certain doors in our house had to be shut - she wouldn't go to sleep until these certain doors were closed. It sounds minor, but some things had to be 'just so' or we were going to be looking at a good one hour fit. Our lives have changed and I'm thankful for that for our family and most importantly for Payton.

This past week was our town's fair. Koen had ran a fever for about a week, so we kept him home and took turns taking Payton. Again, she was a different child. Everyone she saw that spoke to her got a hug....and sometimes even an "I love you" or a kiss on the cheek. There were noises that bothered her, but she covered her ears, gave a startled expression but was able to cope. She loved the kiddie rides, but her favorites were the big kid rides :) My sister and I had taken our two girls together and we agreed that keeping up with Payton is exhausting. I'm amazed how she just walks off with no purpose in mind. She has no idea where she's going, really has no place in mind she wants to go, she just wants to wander - and has fun doing it! The most frightening was when we were on the ferris wheel (it's the kind that seats four and you face each other). We're sitting at the top and Payton decides she's ready to go - she gets up and just tries to walk out - absolutely oblivious to the fact that she's going to fall a long way. Thankfully Sara grabbed her - but we both feel ill anytime we think about it. She is just kind of in her own world doing her own thing :)

The only thing difficult with the fair is I'm realizing that now that Payton is older, people are going to start giving her the 'look'. You know, as your child is a toddler, the things they do are seen as cute, but as they get older it's not so 'cute' anymore. Payton loves riding the little cars that go around and around - and I really think she believes she is driving them. She smiles from ear to ear and gets really dramatic about it; screaming "THIS IS FUN!!!" Other parents were looking at her strangely, giving her an almost "oh my gosh" look and it's hard to start seeing it. I know this is just part of it, but I don't find myself ready for it. Although the first five years of her live have been extremely difficult, I find myself wishing she could stay young forever. However, one little person at the fair must've sensed Payton was special. Payton wasn't too sure about him, but he gave her a big ole hug:

Anyways, I'm so proud of Payton and how she's doing. Here's some pics of her at the fair:

Tuesday, August 19, 2008

Payton went in for her preschool screening this morning. Basically it's just a chance for her to meet the teachers and aide, have her hearing and eyes checked, etc. I was unable to go because Koen's been running a fever since Saturday, but Bob said she had a great time. They tried to check her hearing, but it was being done in a smaller room with the door shut and he said she took one look at the equipment and freaked out. Bob said he just told them her hearing was fine (actually too good :) and they didn't make her do it. I really am excited about school for Payton this year. She is doing so well and is genuinely HAPPY!!!

Here is a pic of her this morning.......I'm not sure, but I think she could fit inside her backpack :)

Friday, August 15, 2008

Wednesday, August 13, 2008

I hesitantly post this realizing that medication is not always looked at fondly for children. However, after realizing that my daughter really no longer had much 'quality' of life I decided she needed the anxiety medication. She's only taken it five days and all I can say is 'wow'. She's a totally different child. She actually slept thru the night by herself in her own bed the night before last. I don't know that that's ever happened. I even had someone tell me that the reason her hair is thin (although you can't tell because her hair is so curly!) and hasn't grown well is because of all the stress she undergoes when dealing with situations. I realize that not every second is going to be blissful - we still see her getting nervous (twisting her shirt, biting her nails, asking the same question over and over and over, etc) but we have seen major improvement. We even took her to walmart last night to get school supplies. Generally when we go there I could hear her screaming several aisles away. Last night, I could hear her talking several aisles away! It felt awesome! (I didn't realize how loud my daughter was until I watched Noel's video of the girls on her blog - my child really has some lungs :). It's kind of funny because sometimes you don't realize how bad it was until it starts getting better. I really felt like all of us were going to snap in two. I'm so thankful my family has been so supportive thru all of this because I really don't know what I would've done without them. (And ofcourse thankful that Bob's folks made the trip here to see us since Payton's anxiety and need for routine were most important). And - ofcourse all the emails and encouragement you all gave me - we needed it and I feel like my family is feeling some peace again. Even after just two days of less screaming and anxiety, we're already finding it easier to get out of bed in the morning. The last picture of Payton reflects how all of us have felt the past two days (even Koen!).

Tuesday, August 12, 2008

Last weekend Noel and her family came to visit. My daughter was in heaven! (Ofcourse, so was Koen because he had Hannah to entertain him). It is so nice to be with another mom who just 'gets it'. Nothing has to be explained, I don't get strange looks, everything is accepted. It feels good! I really wish we lived in the same town so we could get together more often. Ever since Saturday all I've heard about is Abi. When we got up Sunday morning, Payton was furious that we weren't going to see Abi. It was rainy so we weren't sure we were going to swim, then we just decided since it wasn't lightning we'd go ahead and swim. Sure enough, once Payton and Abi swam their 2 minutes before turning blue (hahah!) they went in to take a hot bath. I love seeing these two together........it's really neat to see another child do the exact same things as your child (the way they walk, talk, get angry, hate goodbyes, etc). For some reason, I found it comforting when they left that Abi was having just as hard of time with her goodbye as Payton was. I can't figure out why, but something about goodbyes are just hard for these kiddos! (However, I'm glad we got Payton in the house before she chased their car down the driveway screaming "DON'T LEAVE ME!". She even does this to strangers and I always wonder what they think of us after their gone! :)Thank you so much for coming to see us, Noel. We can't wait to get together again!

Thursday, August 7, 2008

As all of us know, we wait about twice as long (if not more) to hear those precious first words come out of our child's mouth. Because of that, I swore I'd never get tired of hearing Payton talk and would never tell her to stop talking. I ate my words. Finally at around 10:30 last night I said "Payton, stop talking and go to sleep!". Her response was ofcourse, "I am!". Most of her talking was going over what she was doing today.....I get so tickled at her because she'll ask "Tomorrow I wake up, go to Dawn's?" "You pick me up?" We go over and over and over it. Usually she says "say it again" or "say it with me". I'm suprised I don't repeat it in my sleep. She cracks me up.

There hasn't been a lot going on - we're just packing, getting ready for the move, and enjoying time outside. Packing has been a bit difficult because Payton tries to unpack every box we've packed but I think we've finally gotten her to leave them alone. When Bob was gone to his folks for the weekend I was trying to pack some. My mom had given me some shredded paper from her work to use and I had left it in a trashbag in the living room. Payton reminded me that I shouldn't leave her alone for more than a few seconds :) It shouldn't have suprised me one bit when I walked back in the room and saw the shredded paper everywhere. Payton and my cat were in heaven! (I wasn't). Because the damage was done I left it for a day or so for her and the cat to enjoy. And just rounded up paper as I packed.

In the next week we have some meetings for preschool. Payton's teacher called me last week and said she was almost finished reading the book I'd given the school on WS. I about passed out - that book is huge and I couldn't believe she'd read it cover to cover. She said she had some great ideas, wanted to focus on Payton's strengths and had some questions she wanted to go over with me. I'm already impressed with her. I haven't told Payton much about going to school yet because I know if I even talk about it she will think she needs to go right then (even if it's midnight) and the anxiety will kick in and she'll ask about it 24/7 for the next two weeks. I know she'll love it - she always loved being with the kids in the past. So, I'm excited for her to get to go. I did ask her teacher whether Payton would hear the bell ring and she said only at 9am. They are going to get special headphones for her and make sure a teacher is with her at 9am when it goes off. Otherwise, I know Payton would not be easily settled down once she heard it and wouldn't be able to concentrate at all for fear it would go off again. So, as you can tell, school hasn't even started yet and I'm excited about the things they are already doing for her. Next Wednesday I meet her aide. I've heard wonderful things about her and honestly can't wait to see the advancements Payton makes this year.Check out Nancy's post about her last day at the convention. The emotions she described are exactly how I know I would feel. Nancy's words about ws speaks volumes to us:

There is no end in sight to Williams syndrome.Your baby never has been and never will be normal.People are going to call your child a retard. Your child will always be childlike. There is no rest for you. No relief from this agony and perpetual worry.Ever.

Bob and I feel the exhaustion isn't really from having a child who requires so little sleep, it's from the emotional aspect of it all. Thanks, Nancy, for sharing your story on the convention. It really helped the rest of us who were unable to attend.

Friday, August 1, 2008

I had to show off pics of my little man. He is growing and changing so quickly. I remember with Payton we didn't think she would ever grow and Koen is just changing by leaps and bounds almost daily! I don't think there's a day that goes by where I don't sit in awe at the things he does. He loves to read books - he runs and grabs one and comes flying over to sit on my lap to look at the pictures (his most favorite things are pictures of birds....I think cause he knows how to say it). And - he plays! Silly to be suprised about something like that - but Payton still doesn't really know how to play. He watches Payton when she tries to tickle me and he runs over to join in. He just picks up on things and goes with it. He really does bring us so much joy and sometimes I feel like I just don't talk about him enough - I guess that's a sign that he's my easy going little fella. Here's some pics of him.